I have had this awful pain, upper left side of jaw, on and off for years. Several years ago I talked a dentist into putting a crown on a tooth that was healthy; I hurt so badly that I felt something had to be done.
I have dry mouth (and eyes, possible Sjogren's?), so I have some gum recession. I have also had root canals on most of that upper jaw, and when I had X-rays and teeth cleaning in November, everything looked fine, though the pain was starting. The dentist had to leave before she could check my X-ray, but the hygenist told me that she would have her look at it and give me a call if anything looks not quite right.
It hurts to chew, eat or drink something cold or breathe in cold air, and to fairly lightly touch my face. I foolishly ate some of my favorite frozen yogurt with soft bits of cookies in it, and it felt like the left side of my face was glowing with pain. I have to hold my mouth so my teeth aren't touching; kind of gently resting on my tongue. I rinsed my mouth with warm water, brushed, and it's a little better, but it feels like my jaw is glowing.
I tried not to think about it on vacation, but it was driving me crazy. I use sensitive-tooth toothpaste, and that didn't help. I floss at least once daily, and brush with a soft brush after almost every meal or snack. I gently chew some dental gum if I can't brush my teeth.
I prefer to eat high fiber foods, fresh fruits and vegetables, big salads, etc. I ate them anyway, and had a lot of pain. I found myself choosing softer foods, eating (gasp!) some Hawaiin sweet bread, etc. At least the papayas were soft and delicious, and I could move the cold to the other side of my mouth.
Anyway, I finally called my dentist's office a little wihile ago, and they can get me in to see her Tuesday the 27th. I'm on a cancellation list for tomorrow, just in case; I can make it there in 20 minutes at the most.
I'll remind her of all the times over the years that this pain has returned, with no apparent cause, and see what we come up with.
I looked up TN today, and that 5th cranial nerve that causes the problems seems mighty close to that lesion I have on the pons...
Does any of this make sense? By the way, before the frozen yogurt, I saw my physical therapist, who worked a lot on my neck, and then my upper and middle back while I was lying face down on the massage table.
Oh Kathy, this sounds so painful!! I can't imagine how you would have tooth pain if you have had root canals on the teeth on that part of the jaw. There is no nerve. If the X rays are fine, then I guess TMJ is a possibility.
What about Trigeminal Neuralgia? This sounds more like TM than TMJ to me.
Let us know what the dentist finds. Did the Lyrica help the pain?
Thanks for the sympathy; this kind of pain makes me feel like when I was a little kid and had to go to that awful old dentist whose glasses reflected all the work he did in my mouth; the fillings, pullings, etc. Ugh!
I think the Lyrica is kicking in; I'm starting to think about what to make for dinner; something soft.
I asked my physical therapist today way more questions than she could answer, but she did know about Trigeminal Neuralgia as well as TMJ. She's the one that wanted me on a soft diet before I left for Maui because of jaw pain she discovered when I told her about the pulse-like beat I would hear in my ear occasionally.
I'll have more questions for the dentist, and then maybe my PCP or MS specialist (my only current neurologist).
Have those of you out there with trigeminal neuralgia been diagnosed by a neurologist, or who?
I had a dentist quite a few years back tell me I had TMJ and wanted me to get a mouth piece for my mouth...I did and used it at for a few months...it helped with the pain... he said it could be caused from stress?
It did go away and I do get the pain still once in awhile, but nothing like it was a then... I haven't used a mouth piece for years... it was a plastic piece used on the bottom teeth.
I don't know if it was from stress or? take care and let us know how your doing..
I've seen the same dentist for almost 10 years, and she's never suggested TMJ, and she's done a lot of root canals, crowns, and fillings. She's spent a fair amount of time with her hands in my mouth, and checking my bite.
I tend to think more along the lines of Trigeminal Neuralgia, especially since I looked at a chart of where the pain is felt, and one area looked like they marked the side of my face; exactly the right area. Not to mention that some of my sinus pain could also be along the path of that 5th cranial nerve's off-shoots.
I don't have the terminology down, but I'm trying to understand, so maybe I can take an extra Lyrica when I get this pain, intead of spending a thousand or so in dental work.
Nah, the dentist that did the crown on a healthy tooth was one I saw when I tried to find a less expensive dentist. You do get what you pay for! That one had equipment that I swear could have belonged to the Marquis de Sade!
I really should go make myself a sandwich now; I'll check back in later.
I hope your Lyrica is helping. I too have a lot of tooth and jaw pain. I have even had x-rays taken of a tooth that has had a crown put on, and a root canal, because it causes a lot of pain. All my dentist can come up with is TMJ, from my fibro, and stress. I find myself clenching my jaw a lot, especially lately as I drive thru this awful snow and freezing fog. And grinding my teeth. He recommended I get a mouth piece, but it was around $800. and insurance doesn't cover them. Big surprise, LOL. Never cover anything that might help me. I hope you can get in to your dentist soon, and she can answer your questions. I'll bet I can beat you on the amount of fillings, crowns, root canals, etc. done on my mouth!!!! LOL Take care, let us know what she says.
I'm so thankful I don't have to drive in that stuff! The few times we get ice and snow, I just don't go anywhere. That's the up-side of being on disability; I usually don't HAVE to be anywhere except for doctor's appointments.
I don't think I clench my jaw much, especially when I was over on Maui.
I have asked my dentist about TMJ in the past, since this pain thing has happened several times. She didn't think I had it, as I recall.
I don't know about you winning on the dental work contest; I've spent a lot of time in the chair! :oQ :o) For a while I was even having them use laughing gas, hoping it would help it seem less awful.
Then I realized that they have these rule they have to follow; when I needed to go to the bathroom, they had to give me oxygen and wait for me to be more level-headed, then wait to get happy again when I got back.
As much as I have to pee, that just didn't work! Plus, it added to the bill. Now I just take a pain pill, 1/2 diazepam if its a root canal, and try to meditate.
I'm so happy my insurance covers two cleanings a year now; at least I don't have that expense any more!
It's taking me a long time to eat my cereal this morning; first I let it soak a while, I take very small bites and am careful to chew only on the right side. It's 9:30 here, and I still have half a bowl to go! At least I'm not hurting much....
My dentist did not diagnose my TN but he did confirm my teeth were fine and there was no reason to think they were causing my pain.
So I went back to my PCP and he is the one that said if the teeth are ok then probably TN.
He said the only way I would know for sure is if I started anti seizure medication and got some relief. I started Trileptal and it was a miracle! No more horrible pain.
I do still get break through pain but for now the Trileptal and klonopin are working.
I have to have both medications to keep the pain under control.
Hope this helps a little.
Dental problems go hand in hand with Sjogren's...more evidence for you. I found a dentist who is familiar with Sjogren's and that has helped, at least he understands that my dental problems are not due to lack of care on my part.
I agree that it sounds like you may have an atypical form of trigemina neuralgia. TN is historically referred to as "The Suicide Pain" and some feel is the worst pain syndrome known. In its classic form it is a paroxysmal, and shooting pain in one part of the face due often to a compression of the Trigeminal Nerve, which is the fifth Cranial Nerve.
The Trigeminal nerve, carries sensation from the face to the brain. It has three branches. The first handles the sensation around the eyes and from the forehead. The second branch deal with the sensation on the side of the face between the eyes and the jaw. The third handles sensation along the lower lip and the jaw. But, also the nerve carries sensation from the lips, gums, inner cheek, and parts of the anterior tongue.
Here are pictures of the areas handled by the three branches of the Trigeminal nerve.
Trigeminal neuralgia is also very common in MS. In fact it is about 300 times more common in MS than in the general population. When it appears bilaterally it is almost always due to MS, according to some neurosurgeons I have read.
TN is usually confined to one branch of the nerve. It usually occurs in the second or the third branches. The triggers to the pain can be from touching a certain part of the face, nose, or lips, it may be dental, or from the tongue. The area can be so sensitive as to be triggered by something as soft as a breeze. Rather than give the whole story about TN, here is my favorite cite dealing with it, by the TN association (fpa-support.org)
When the problem with the nerve (like an MS plaque) is in the area of the teeth, the pain feels just like a severe dental problem. In this case the dentist is the first doctor that is usually seen for the problem. In fact, some ignorant or unscrupulous dentists have pulled healthy teeth to try to deal with the problem. Or they have done lengthy and expensive treatments calling the pain a TMJ problem. Also, many patients like Wobbly have begged for the dentist to do something to relieve the pain.
Nowdays, dentists are taught to recognize the possiblility of TN being the cause for persistent dental or pacial pain. When the teeth are examined and xrayed and found to be healthy, Trigeminal Neuralgia should pop into suspicion.
Recently many neurologists and neruosurgeons have included another type of pain in the classification of Trigeminal Neuralgia. This is a duller, more aching pain in the area of the branch that lasts more than half of a patient's waking hours. It also may severe.
The cite above also has a Diagnostic Questionaire for people to take to see if it is likely that the face or mouth pain they have is TN. I think that questionaire was developed here in Portland at OHSU.
I was having long periods of shooting pain triggered unpredictably by chewing. I could point to the molar that was causing the problem. About the time I would get up the courage to go to the dentist, usually a couple months, the pain would go away for a few months. Finally I saw my dentist and he said, definitely sounded like TN, because the tooth and the ones surrounding it were healthy and severe dental pain didn't come and go.
By the time I told my MS Neuro about it - it was an almost constant severe ache through my whole lower jaw back to and including the TMJ. Nothing made it better and chewing would still often cause the shooting, excruciating pain. He prescribed carbamazepine (Tegretol), which is the firstline drug to use for TN. The pain magically melted away as I worked my way up to 300mg three times a day. Other drugs used for it are the ones mentioned above - almost all of them are anti-seizure meds.
So anyone with face, dental, tongue pain either constant or shooting should read all of the info on the fpa-support.org site above and take the diagnostic questionaire. It answers a whole lotta questions.
Yes, Virginia, your dentist ought to consider and tell you about Trigeminal Neuralgia if you have pain that seems dental, but the teeth are healthy.
I have to stay on my medication. Recently the pain has been constant. In the past it would come and go. Very often the side of my face would hurt like I had been hit. It was difficult time find a place to put my head for sleeping. Even the pillow hurt.
I would get horrible zaps through my head that made me sick to my stomach.
I have been very grateful for my medications and the relief I've had so far.
I just realized that I forgot to thank you all for your input;
Quix, your information is excellent, as usual. I did have a problem with the questionaire; it asked if I had MS, and I had to mark no, as there wasn't a "I don't know". It still suggested that I could have a type of TN.
I'm so glad that your medications help both of you so much; your experience with TN sounds at least 10 times worse than mine, and mine hurt pretty badly at times.
I took an extra Lyrica last night, and it really seemed to help. I had been having trouble getting to sleep because of the pain, and it allowed me to get to sleep.
I slept in until almost 10 (after giving Fluffy his morning meds and feeding and taking my normal morning Lyrica). I've had a slow-moving day, especially when eating. I've kept the pain-level down to tolerable, but I don't feel like doing anything. Pain is tiring.
I had the same problem when I took the questionaire with someone else's data who wasn't yet diagnosed. So I took it both ways, saying she did and didn't have MS. It did not change the assessment. There is likely some combo of answers in which a diagnosis of MS would affect the outcome.
This is something you should tell your MS specialist.
You are doing the right thing. First you rule out other causes. If the pain seems to be in a tooth, then you see if the tooth is healthy. If it is not, then you move on toward TN. Since your neuro is at OHSU and that is where the questionaire was developed, I think, she would not hold you to the zap-like lancinating pains. My neuro who also has close ties to OHSU did not question that mine was TN. It started with just these excruciating zaps of pain sometimes when I chewed, but then it also developed the "most of the day deep, penetrating jaw ache.
That was another question I hovered over, and chose 50% of the day instead of most of the day. When I looked back at the pain in Maui, trying all sorts of things to try to relieve it, and the ache interfering with my going to sleep, I think I chose the wrong answer there. I don't know if that would have made much difference, either.
I will give my ms specialist a call if my dentist can't find a reasonable explanation for the pain I'm going through. I got a few blinding zaps while chewing, more from eating ice cream, and a couple from a sharp intake of breath. Then it would be a deep, penetrating ache, all right.
This has been the worst episode of this pain.
I was thinking about adding it to my timeline, and trying to pin down the date that it started, etc. I don't think I mentioned the previous episodes, although I did tell each neurologist. I'll have to take a look at my timeline; its about time to update it, anyway.
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